Building Family: How Guardianship Can Create Community

I found it in my grandparents’ dining room, tucked alongside the candles and platters they used on special occasions. At that point, my grandmother, whom I called Dibi, had lived with Alzheimer’s disease for a few years. Ever the charmer, Dibi could hide it well, but those of us who knew her knew the battle was just beginning.

With Dibi and Pop Pop, circa 2004

I love to think about that box and imagine what was going through her mind as she collected the buttons, charms and miniature figurines to store inside it. I see her giggling to herself as she tiptoed through the house, finding gems in the ordinary.

That’s a time I like to remember – before the nursing home, pureed dinners and the weeks in a twin bed. She passed away one afternoon in September 2011, unable to speak (with words) to my mom and my aunt who sat by her side.

But Dibi was lucky in so many ways during her 95 years on this planet. She lived a life surrounded by loved ones who helped her stay independent for as long as possible. Her adoring husband, my Pop Pop, along with the entire family followed her spirit when big decisions were on the table, particularly at the end of her life.

Many people do not have this kind of support system, though, and that’s where adult guardianship can come into play.

This summer, I’m working for an Ohio judge who oversees a guardianship network in his home county. Guardians are appointed by the court to act as advocates for certain individuals living with dementia, disabilities or mental illnesses. Most guardians are family members, but for those without relatives, professional guardians or trained volunteer guardians are assigned.

Guardianship laws and procedures vary from state to state. But essentially, guardians support adults of all ages who need help making decisions. And don’t we all? Each day, we lean on others – from loved ones to clergy – as we make choices.

Part of my job this summer is to interview the county’s volunteer guardians. (Note: These trained volunteers have what’s called guardianship over person, not guardianship over estate.) I am in awe of their dedication and commitment. Volunteer guardians are, first and foremost, companions. They get to know their individuals as people and often develop lasting friendships. They’re also legally responsible for the health and well-being of their charges. That’s a big deal.

Reports of guardians abusing their power or neglecting their charges make headlines – and rightfully so. Those problems cannot be ignored. But from what I’ve seen this summer, there’s a lot of good going on. Guardianship – when done right – can establish supports for people who need them, such as those in the late stages of Alzheimer’s disease.

Throughout Dibi’s disease, we were there for her. She had support and encouragement and love coming from four generations. Blessings like that, I’ve come to realize, are rare. But we all deserve them, and we all should find ways to support others by doing little things – and big.